Crazy Weekend

Haleigh seemed to really enjoy the long weekend.  It was nice that she wasn't sick for once.  I think the heat got the best of her yesterday tho.  She was in bed super early and had a rough night of sleep.  She has been pretty fussy all day, but I think she is cutting her bottom pointer tooth.  Let's hope!  She wanted nothing to do with being alone today and everything seemed to really upset her.  I know when she doesn't feel well she just wants to be with mommy (which is ok with me)!!
We have a lot of awesome pics from the weekend.  I am sure Josh will have them posted later.
Josh also got her Almond Milk today.  We are trying some different things with her since she still seems to be vomiting a lot.  She was tested for allergies (which she doesn't have) but we were hoping the almond milk may help her little tummy. 

Memorial Day Weekend

Yesterday we had a cookout at our house.  We had over a bunch of wonderful people including Haleigh's new friend Elliana!  She is the most precious little girl and a true miracle to her family as well.  She was born with a heart defect and will be undergoing her second of 3 surgeries on June 8th.  This beautiful girl and her family will be in our prayers.  Haleigh and Elliana are 2 medical experts in the making!  With the looks they give each other, some day i feel like they will be a couple little rascals together.  Haleigh loves having someone her size around.  
Josh had a good time playing with the older kids and other dads.  I think the dads may of been having more fun.!!  Our angel fish of 5 years finally got a name.  Elliana's big sister Aubrie named him Orial.  It's a keeper!!  I just hope I spelled it right!


Overall it was a fun day with a lot of food that i ate way too much of!!   Haleigh enjoyed some chocolate cake herself.  I think by the looks of the picture she liked it.  

I hope you all enjoy your holiday weekend!  

Haleigh in her garden

Hello

Hello family and friends and welcome to our blog.  This is all very new to me.  I have been following a few blogs and feel like it is a good way to communicate and keep everyone updated with Haleigh and our life.  Myself and my husband Josh live outside of Washington DC with our 20 month old daughter Haleigh.  As many of you may know our life has been kinda hectic as our daughter deals with an unknown genetic disorder that is keeping her from growing and thriving as she should.  She is currently 20 months old and weighs 11 pounds 6 ounces as of May.  The doctors have her currently labeled as "severe failure to thrive" with unknown causes.  This has kept Josh and I very busy with Doctor appointments and therapy sessions for her.  Just to give you all a little background, she currently is being followed by a number of specialists.  First of course, she is seeing genetics at the University of Maryland and Children's Hospital of Philadelphia.  She sees a Neuro-geneticist at the Children's National Medical Center.  She is also followed by Endocrinology, GI, Orthopedics, and physical therapy.  She has been tested for a number of disorders, all of which came back negative.  Most of her doctors are completely puzzled as to what may be causing her growth failure.  She most recently has been tested for Cockayne Syndrome.  We have not yet received the results for this test.  We are also in the process of getting her into the National Institute of Health Rare and Undiagnosed Diseases Program.  Her doctors have recommended the NIH program because they are all puzzled at this point.  She doesn't walk, which they believe is more of a strength issue.  Surprisingly she eats everything in sight!!  Eating is her favorite past-time, and there is not a food she will turn down.  She eats as much, if not more than, as a baby her same age but twice her size.  I have yet to find out where she puts it all.  She is a very happy and funny baby.  She has a wonderful personality as well. 
I hope this is a good introduction.  As i remember more i will fill you all in.  I hope you all have a wonderful holiday weekend!  :o)